Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, October 31, 2014

Brittany Maynard: Assisted Suicide is Not a Personal Act

I am opposed to assisted suicide legislation. In the last month end of life in the form of
assisted suicide has been at the forefront of my mind thanks to Tim Bowers and
Brittany Maynard. Maynard's story has gone viral and millions of people have
seen her video created with the assistance of Compassion and Choices. Bowers
was briefly in the news a year ago. Bowers was an avid hunter who fell from a tree stand
and experienced a severe spinal cord injury. He died within 24 hours of the
injury. What makes Bowers death unusual was that his family requested heavy
sedation be lifted so he could decide if he wanted to live or die. Bowers chose
to die.

Any nuanced effort to analyze why Bowers died immediately
after a spinal cord injury is perceived to be in bad taste if not cruel. Any
criticism of Maynard’s highly public end of life replete with two tear jerking
videos is also thought to be cruel. How can one criticize Maynard and others
who are terminally ill? Criticism is needed.
Without criticism and serious discussion end of life issues will remain
obscured. This criticism is not about Maynard or Bowers directly. I do not in
any way criticize the Maynard or Bowers families. Maynard can legally die in Oregon via the
Death with Dignity Act: that is her legal right. Bowers family had the legal
right to ask Tim Bowers if he wanted to die. Both the Maynard and Bowers families did
what they thought was right. Again, I do not question this. Maynard and
Bowers were loved by their families. I accept this as a given and they have my
deepest sympathies.

Like a few others, I take exception to the slick Compassion
and Choices PR campaign.I decry the
romantic vision of death and extreme emotional hype the media has used to
generate news ratings.I despise the lack
of reason involved. I am deeply disturbed that
neither Bowers nor Maynard has generated the sort of serious discussion that
desperately needs to take place.I
question why did Bowers die? Why was autonomy so narrowly perceived?Why was life post spinal cord injurybelieved to be a fate worse than death?These are questions, social problems, that need to be addressed. It is not an exaggeration to note lives are at stake. Bowers did not want to live in a nursing home.What young married man would want that? None.
This is the leap of logic no one took—why do people with an injury as severe as
what Bowers experienced live in a nursing home? Why do the vast majority of people
with a disability remain unemployed? Why is poverty and disability commonplace?
I can only conclude the ADA, and the last 40 years of progressive legislation
designed to empower people with adisability, has been a legislative success and social failure.Simply put, laws that were supposed to make
people with a disability equal have not resonated culturally.

Maynard’s end of life options, like the choices Bowers
encountered, are not good.End of life,
especially assisted suicide, is perpetually in the news.What makes Maynard different is the extreme
emotional manipulation. Rather than asking how can we empower people with a
terminal illness to get the most out of life via outstanding palliative and
hospice care we frame the discussion around the right to die. Dying is not a
right. Dying is a biological inevitability. No one dies in a social
vacuum.The extreme emotional framing
effectively negates any real discussion of the social implications of assisted
suicide as practiced in Washington and Oregon. Even the slightest dissent is met with a
backlash. For example, Ira Byock suggested Maynard could have the peaceful
death she desires via palliative and hospice care. He suggested she need
not take a lethal medication. I thought Byock was deferential but Maynard
lashed out and stated she was concerned“that Dr. Ira Byock will speak on
my behalf and that as a terminally ill patient I find it disrespectful and
disturbing when people discuss my personal health with details that are not
accurate to push an agenda”. Byock did not speak on Maynard’s behalf but
rather suggested other viable options existed. The person with an agenda is not
Byock but rather Maynard. This is not a critique but a matter of fact
observation.In this regard I am no
different from Maynard—we share oppositional agendas. We are both acting as advocates. We both have the right to state our opinions.

Lost in emotional rhetoric are the social, political, and
health care ramifications of assisted suicide legislation. Kevin Yuill, in Assisted
Suicide, wrote:

“The right to die
sought by proponents of legalization of assisted suicide is not a right or
freedom at all. It is a heavily regulated process that will undoubtedly become more and
more regulated with so many safeguards that those who suffer at the end of life
will be worse off… The death bed scene will have to be regulated if it is to be
transparent. The actions of relatives and doctors alike may have to be
monitored. The time-honoured tradition whereby doctors occasionally bring
relief to suffering patients in theirlast few hours or days will be brought under official control… Once
bureaucratized, there will be no space for compassionate deeds… Thus,
ironically legalizing assisted suicide may well be worse for the dying.Whereas we might impute the noblest reasons
to those campaigning for a change in the law, the devil is in the details.

Byock is correct in stating “physician assisted suicide is
not a personal act. It is a social act”. If this social act becomes as
bureaucratized as Yuill suggests no person near death will benefit from
assisted suicide legislation. This is exactly the sort of discussion we have
failed to engage in. Reason is replaced by emotion—Maynard is an extreme
example of this.No one is questioning
her personal health care choices. To do
so would be wrong.As Yuill noted the
devil is in the details. I want to those details to be subject to intense
discussion.

4 comments:

It's interesting that Maynard apparently is using her situation as pro-assisted euthanasia public relations and yet she criticizes someone who responds negatively. It was she who chose the public forum.

Julie. I have very little hope an appropriate discussion will ever take place. Gary, Any response to Maynard that differs is thought to be objectionable. She has individualized assisted suicide and negated the very real dangers that need to be fleshed out. She is perfect for Compassion and Choices.

In the first instance the man who had the spinal injury should have been told as with my husband that it would be about 8 weeks before they would know for sure the extent as there is swelling a after accidents and it takes time for things to settle. Even if the Spinal cord is severed as it was with husband they provided intensive rehab and physio something they are not so good at these days. He had 25 years of life most good some not but he lived and might still be alive had the medical mafia not stuffed up his treatment. To be allowed to decide to die this soon is not a choice as he would have no idea of the outcome for a start. I have known Quadriplegics even higher up than my husband who despite their restrictions are fighting to live.As well I have watched some relatives die from terminal cancer. Not a one chose to end it all and they could have as we had a shoe box full of Morphine vials and a syringe driver with my sister in law - she could have easily filled it up at any time till just near the end. What was done was good palliative care in that the morphine was given to cover her pain as much as it took. In the end the morphine needed to cover the pain becomes a balancing act and as one nurse said "Good palliative care is effective pain relief and a side effect of that is that often the patient succumbs to the morphine to ease the pain" but no decision to die is made - it is used as pain relief and if done properly eases death - usually the patient is very close to death. This happened with my husband. He was struggling to breathe and lungs drowning - he was beginning to become distressed because of this - so small doses of morphine were given to ease his distress - not too much and he remained lucid till seconds before he just died. There is a huge difference between good palliative care and people taking the decision to kill themselves at a certain time.